To raising Autism awareness and Acceptance, and battling negative stereotypes about Autism.
To advocate for the inclusion of Autistic people in the community.
To offer a forum to broadcast our stories and thoughts, and to help the messages of Autistic people and non-Austistic allies reach as many people as possible.

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Tuesday, November 6, 2012

J. Gray writes Autistics Speaking Day this yearThis year for me is very different from Autistics Speaking Day last year. On the last autistic speaking day I lived about 1,000 miles north from where I do now. I lived with my parents and a sister in a townhouse in a middle-class neighborhood. I had some autistic friends from a local autism group and I didn't have a lot of adult responsibilities to think about then. This year I live in a trailer community, I use the bus for most of my transportation, and live with one other person who is also autistic.

Things have changed over the year though. I attended autreat twice but since then I've missed two autreats and it's unlikely I'll attend any soon do to finance issues. I don't see most of my autistic friends in person anymore, but I have more than ever before online now. Last year I didn't expect much of any of my relationships, and this year I can say I've been happily living with my autistic fiance for over six months.

I've also come to realize though that sometimes being an autistic adult sometimes means it's very difficult or nearly impossible to get married. I live with an autistic man who receives disability. We have no certainty when or if we can ever get married and still afford to pay bills. Even though I get upset by thoughts about being unable to get married, how will I pay for college, or wondering what sort of job would be appropriate for my skills or ability these things are less upsetting than they used to be.

I'm less alone than I used to be on these problems. I've found both autistic and NT friends online with similar issues. I've expanded a lot on including the entire disability community in finding people with common interest as myself. Things are somewhat easier to handle when other people are around to add affirmation to my feelings. My neighbor is not autistic but has some mental health disabilities and the other day out of some unrelated topic just says "I don't think it's right that some people on disability should have restrictions on getting married (okay- these weren't her words, but that's what she meant)". I wish that things like SS restrictions, bullying and abuse in schools and workplaces, exclusion of autistic individuals , etc. didn't exist and I didn't have any message to tell. For now though things like other people's acknowledge and understanding seem like progress compared to the days I was and elementary school or middle school and had people calling me "psycho".

Saturday, November 3, 2012

Nickolas D writes My History on Self- Determine and Independent through Autism I am Nickolas Duncan, and I have Asperger's Autism. I was born in January during the early 1990's. I currently work at Earth Fare where I am a courtesy for four years, and I had so much fun working with the best co-workers, and meeting new people. Since then, they were cutting my hours due to economic times and I can't work more hours because of it, so that's why I've been job hunting for 15 months with no success. The interviews I had with other grocery stores wasn't accepted, and the job referral didn't work either. The workplaces I applied to, had no experience working with autistic people.

My story began when I turned two years old; at that time when my parents took me to the doctor, and he said I was diagnose with autism. I always have problems communicating with other people and friends while it was very difficult to learn how to read and combine numbers, but I also had anger issues. I always didn't know what proper behavior was until I got older; it was full of bad choices that took awhile to overcome. During that time, I attended three different elementary schools such as Hunter, Foust, and Pilot. Hunter Elementary was a little OK, but when it was nap time I wasn't used to sleeping at all; however I did learn a little bit along with my former classmates, then we had free time; the same thing with Foust Elementary.

When I attended Pilot Elementary School, this was my most challenging school to cooperate with my new classmates, and my childhood friends from my previous school. We mostly got along really well on certain days, however, there always was a difficult time with behaving very well. Next, when I got to the fifth grade I was finally able to learn on my own behavior and make outstanding grades. The fun thing about this school is participating in Special Olympics like Running and Bowling, where I won many ribbons in first, second, and third place where we compete against other autistic children.

Continuing the story, I attended Allen Middle School my entire sixth grade year, it was full of bad memories where there was no respect in the classrooms I go to except my homeroom and one encore class. Even though I got many outstanding awards during this school year and making new friends, I was still treated so badly by my mean teachers ( not the best learning environment) despite my hard work. I was very glad to leave that school to transfer to Kernodle Middle School where I reunited with my childhood friend and had the best teachers and friends in the world. That's where I become the one of the most popular students in this school which is my most favorite place to go to because it was one of the honor schools of excellence. We also participated in Special Olympics where this time I won medals.

I'm not going much about high school ( I graduated with honors and as a member of National Honor Society), but more about college I attend called Guilford Technical Community College majoring in Computer Information Systems. I've been attending this school for four years where I enjoyed an incredible learning environment where I reunited with most of my childhood friends, and I even met new friends who continue to support me even if have sad moments in my life, so I want to thank them for always encouraging me to reach my goals.

I also like to thank my parents who have been with me all my life supporting me and helping me accomplish things, I love them with all my heart, and including my family members, my cousins, and my grandma who is a special woman in my life (if she was still here, she would be proud of me) and I will always miss her.

We all need to help raise autism awareness, and let the entire community know that all of us including our allies are helping fight for our rights to have be treated equally as everyone else.

I’ve written here once before about the memorial cairn I tend in my backyard, about the small (and yet too large) huddle of stones that mark the lives and deaths of fellow disabled people who have been murdered. I’m writing once again because it’s the beginning of November, when I hold my yearly vigil, and because it’s the time of Autistics Speaking Day.

Not all of the stones I had to add this year were for autistic people, though many of them were.There’s a lot of overlap in the issues faced by the autistic community and those facing the disabled community as a whole, and that’s tended to be particularly true here.For the past five years I’ve marked the night quietly and alone- but tonight, I’m here to speaktheir names for anyone who will listen.

Lady Ashmire writes Late ASDay post ( or untitled)I've wanted for awhile to participate in Autistics Speaking Day, but have not been able to since it falls around holiday time, which tends to mean that executive function and language access difficulties are through the roof for me( not helpful that my keyboard is currently messed up pretty badly). As it is, this post will be late, comprised at least partly of disjointed jottings from other occasions, and made possible only by indulgence in a venti latte, which I do rarely for fear of building up a tolerance to caffeine and losing access to its extremely helpful benefits.

Fragment I:

Discussions overheard lately, being near Halloween, have now got me questioning to what extent my experience of fear is similar to that of NTs, and from there also wondering whether it's really me that has the problem understanding the nature of emotions after all. First of all, many NTs claim to enjoy experiencing fear. This makes no sense to me. I think this may, however, be partly due to the fact that, as far as I can tell, they experience when visiting a spook alley or watching a horror film something like my normal baseline levels( BTW, I don't find most of that stuff scary anyway, just physically repulsive---this applies to "If I did get scared, however"). They also seem to think handholding and cuddles are both comforting and a benefit to this type of experience. At the point when I would consider myself to be frightened worth mentioning, I'm in full-on fight-or-flight mode, and any zookeeper will tell you, a primate( humans included!) in such a state isn't something good or that you want to try holding hands with! Fear, from an autistic perspective, isn't something you F___ around with for entertainment, but a true force of nature in itself. We always assume that Dr. Banner's transformation to Hulk( which BTW, I see as a pretty good fictionalized representation of an Aspie having a meltdown) is fueled by anger, yet anger without fear to drive it invariably fizzles rapidly. In fact, I do not see how it is possible to experience the two independently. In spite of this, I've frequently had NTs claim I'm lying about my reactions because they "See anger, not fear" in my expression. There is no anger without fear, no fear without anger! Fight-or-flight is ONE thing, not two! Even love, that supposed conqueror of all, is basically only an extension of fear, the expansion or dislocation of one's survival instincts onto to another individual.

Fragment II( taken from a comment I made on another blog a year or two ago---the first sentence may sound a little odd without the context but I'm no longer able to find that):

My opinion is that echolalia really refers to two different if related phenomena. I DO have times when I get a word stuck in a mechanical loop without meaning( sometimes repeating a single word in the middle of a sentence several times, which sounds odd). I do this mainly when fatigued or in pain. But the other kind( used on purpose to communicate) described happens, too, and I think also gets confused with the phenomenon of scripting.

Scripting is *definitely* intentional communication( well, some of it might be fun play from some children), at least from me and I suspect from many others. There is an old Star Trek: TNG episode where they meet a race that cannot be understood even with their Universal Translator, because these particular aliens speak almost entirely in literary allusions---to literature that humans have never had the opportunity to read. This is almost exactly what I did as a child and even into my early 20s, though because by the time I was in my teens I was using Poe, Shelley, and Shakespeare I just got the reputation of being a dramatic goth kid instead of the real truth, that I couldn't find my own words quickly enough (if ever) so I just used the approximately synonymous phrases of others. (I seem to recall a very early Gary Numan interview where he seems to describe this as actually a part of his creative process, but no NT I've heard that read this was able to understand what he was talking about).

Where it bogs down is if one person gets a totally different message from the text, also I believe some small/more classically autistic kids may associate unrelated emotions to the words due to outside happenings at the time of listening to them, e.g. they quote a movie that they were watching when they last felt the particular emotion they are trying to describe, but that bit of dialogue has no relation to what was happening to them at the time.

Fragment III( from a forum post I made):

I would never have met any of my real-world friends and would have been completely isolated as a teen without online socialization. Being around people physically does not lead to meaningful interaction for me. It's not shyness( though sometimes I can feel shyness if I particularly admire someone or need their approval for external reasons), as I don't really fear rejection or think about it much. I just...can't process in that way. For many years I thought I got hangovers from alcohol or from tobacco allergy or was staying up too late. By process of elimination, however, (i.e., it happens even if I don't drink, no one is smoking and I still get normal sleep time, but does not happen if I drink alcohol by myself or stay up till the wee hours absorbed in a special interest) I discovered that, actually, being forced to socialize in person, especially in a group or without other purpose than socialization itself, directly causes physical pain and exhaustion( symptoms almost identical to what is described for alcoholic hangover) and lowered functioning/increased autistic issues( such as mutism and intensified sensory issues) for the next 1-3 days. Sometimes I do want to see my friends or at least support something they are doing, but it requires a LOT of planning and acceptance of downtime.

Fragment IV: I don't think I could ever describe to any NT the soothing rush of sensory happyOMGYAY!! I felt at the sight of this display in the store today:Edited to add: No idea why the link does not work, but the pic is here:http://www.freeimagehosting.net/sad2lI know nothing about this line of toys, but I wish it had been around when I was a kid because I would have gone nuts collecting these! Blue and gray and SOFT! My newborn pics have me in blue instead of the expected pink, not because my parents wanted to buck tradition, but because it was immediately obvious from birth even without ever having heard of sensory aversions that I would cry and freak out self-destructively if wrapped in a pink blanket, yet was as calmed and fascinated by blue things as I was distraught by pink. I did get somewhat desensitized over the years (won't get far in life if you can't stand the sight of your own skin), but still often have to leave an area of a store with Valentine or Breast Cancer displays due to overload---it feels almost like the achiness of oncoming fever, and still feel so, so blissful with pronounced amounts of cool blue tones around me!

My early years were happy ones as there was so much joy to be found and experienced in the quiet of life. Moments were captured and as the film developed, I learnt to interpret the world through my senses. I could happily spend hours absorbing the frames of life, searching out patterns and being sure to feel every detail. Ever longing for information, I would seek out more and more until I exceeded an ever changing threshold and would end up sobbing and exhausted in my mother’s arms.

What a marvelous life. How lucky are we who get to experience this?

But I was not considered to be the lucky one. I didn’t understand that others were not sharing the same experience as me. It seemed silly to say out loud the things which I found so obvious. Why look someone in the eye when there were many more things to look at which resulted in me feeling considerably less ill?

I did not think to join in the games of others. As I grew older, I have vague memories of being herded towards different groups of children and told to “play” with them, that they were my “friends.” If only the memories of the merciless teasing or being drawn into talking about my interests only to be mocked about them later were the vague ones.

It’s lucky that I was smart. I soon learnt that I could make alienation happen on my terms. Life becomes much more calmer when you can control the hate that is directed at you.

High school revealed that I was more than just introverted. I had a brain that would latch on to an interest and treasure it to an extent that I still do not have the words to describe. In fact sometimes there are no words to describe a concept and only a flap of the hands will suffice. The rule based dance that sent words back and forth between people alluded me. I found the conversation of others to be a thing of wonder.

I now realised that I was not as they.

Later I would read that there were words for people who demonstrated traits such as mine.

I displayed a qualitative impairment in social interaction.

I displayed a qualitative impairment in communication.

I displayed restricted, repetitive and stereotyped patterns of behaviour, interests and activities.

I was Autistic. I am Autistic.

This is okay.

It is true that I often have to try significantly harder to complete tasks or engage in activities that others can do subconsciously. There are some opportunities that will not be open to me. This does not mean that I am less likely to be happy than those who fall within the norm.

Knowing that there were people on my side helped greatly. Understanding and accepting family, friends and professionals can make a world of difference to those on the spectrum who at times can feel so alone. I now strive to be that someone.

IntroductionThis paper will explore two issues in disability that of cure and that of acceptance. Particular attention will be paid to the area of Neurodiversity, that is the idea that people diagnosed with autism and related conditions form a neurodiverse population that forms part of the human spectrum of diversity.The idea of a cure for permanent impairing conditions has been a principal focus of medicine for centuries and for decades many public resources have been injected into finding cures for specific conditions. Shakespeare (2006) proposes that the representation of people with impairment as ‘needing a cure’ is a powerful mechanism for attracting funding to charities and from government. On the other hand some groups of people with impairments (mostly excluding those with life-threatening and degenerative conditions) are willing to forego the idea of a cure in favour of personal and public acceptance of their difference and diversity (Baker, 2011; Shakespeare, 2006). One such group is the Neurodiverse – encapsulating people with autism.Autism is a condition that is neurobiological in origin and manifests itself in a spectrum of disorders as described by modern psychiatry. These disorders include autistic disorder, Asperger disorder and Pervasive Developmental Disorder Not Otherwise Specified (APA, 1994). Each of these disorders is characterised to an extent by communication difficulties, social deficits, and restricted and repetitive behaviours. There are a number of documented treatments for autism including behavioural therapies, psychological therapies, pharmacological therapies and biomedical therapies, all with varying degrees of success and validity (Herbert, Sharp, Gaudiano, 2002). It must be noted that there is at present no scientifically validated cure for autism (Autism Science Foundation, 2012).Neurodiversity and AcceptanceThe Neurodiversity Movement provides a challenge to modern conceptualisations of autism and puts forward the idea that autism is naturally occurring, not a disease, and should not be the subject of medicalisation and subsequent treatment or cure (Ortega, 2009; McGann & Hutson, 2011). The Neurodiversity Movement relies on strategic essentialism (Garland-Thomson, 1997) in the formation of a minority group with a particular set of characteristics. To this end the Autistic Self Advocacy Network (ASAN) (2012), the largest proponent and organizer of the Neurodiversity Movement, refers to Autistic Community and Autistic Identity as signifiers of this minority group. Bagatell (2010) observes that the discourse of this autistic community provides an interpretation of what it is to be autistic that is in direct contrast to the descriptions in the biomedical paradigm. Her research suggests that people within the neurodiversity movement want many behavioural aspects of autism to be accepted as difference and that autism be treated as a fundamental part of who they are, feeling that without autism they would not be the same person.Baker (2011) highlights a continuum of understandings of disability from essentialist through to constructivist, the former locating disability within the person and the latter locating disability in the social and political infrastructures surrounding the person with impairment. This continuum of understanding disability has some correlations with the understanding of the perspectives along the continuum between cure and acceptance, however, facets of essentialism and constructivism cut across this continuum. As highlighted previously The Neurodiversity Movement relies on strategic essentialism but it also draws heavily on constructivism, placing the disability associated with autism within the realms of social construction, and arguing that much of the disability could be ameliorated if society were to accommodate and accept neurodiverse individuals, making difference relative. (Garland-Thomson, 1997; Bound, 2008; Baker, 2011). Baker (2011) argues that those engaged in neurodiversty activism consciously employ the theories, language and tactics of previous proponents of diversity in the twentieth century. The wider disability rights movement, the gay rights movement, black power and feminism have all influenced neurodiversity activism.Within the Neurodiversity Movement there is a specific focus on acceptance of diversity and celebration of difference (Baker, 2011; Robertson, 2010). ASAN (2012) argue that:“Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society, thus allowing all people to live up to their potential.” (n.p.)Estee Klar, (parent of a child with autism), founded The Autism Acceptance Project, which has generated such projects as Autism Acceptance Day, Autism Acceptance Month and Autistic Pride Day. Klar delivered a series of lectures entitled The Joy of Autism: Redefining Ability And Quality of Life, which have been acknowledged both by ASAN and the United Nations as being definitive of autism acceptance (ASAN, 2012). Through her blog Klar (2012) explores the challenges of raising a son in the face of society’s ableism, believing that teaching the world to accept her son’s autism will increase his quality of life.At an international level The United Nations, through World Autism Awareness Day, promotes acceptance of people with autism and their families through upholding their rights. According to the secretary general of the United Nations (2012) World Autism Awareness Day “should spur global action to combat the “unacceptable” discrimination, abuse and isolation that people with the disorder and their loved ones face”….. and…. “people with autism are equal citizens who should enjoy all human rights and fundamental freedoms.”This came after submissions to the United Nations such as the one from Nelson (2004):“We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured. (Nelson 2004, cited in Davidson, 2008: pp799)Critics of the Neurodiversity Movement say that this approach does not accept that some people may desire a cure for themselves or their children who are affected by neurological conditions. Initiatives, such as Defeat Autism Now, have sprung up around the notion of cure and recovering children from autism (Rocque, 2010).The CureContextualised by the essentialist medical model of disability the reflexive desire for a cure is often the first line of response for those confronting a diagnosis of autism (Baker, 2011). This is hardly surprising as within western society there is a message, both overt and covert, that anything outside of normal is unacceptable and normalcy is habitually expected. (Posavad, 2009; Baker, 2011) From Posavad’s (2009) study of the lived experience of mothers of children with autism highlights the feelings of parents:“Loss of control seems obvious out of sadness for what her child is and might never become. Pressure to ‘help’ her child creates feelings of frustration and disappointment”(pp. 52)In the context of the stress of parenting a child with autism many families seek or at least hope for a cure for autism. Many parents see their child’s autism as something that masks the real child and prevents them from living a productive life, furthermore, causing the children emotional and physical suffering (Bagatell, 2010)In America, the National Alliance for Autism Research (NAAR), founded in 1994, and the Cure Autism Now Foundation (CAN) were the comtemporary forerunners in the search for a cure in America and have since merged into the organization Autism Speaks (Ortega, 2009). Autism Speaks, heavily situated within the medical model of disability, has clinical programs such as the Autism Treatment Network, The Autism Genetic Resource Exchange, The Autism Tissue Program and a clinical trials network. In Australia the Mindd Foundation has been set up in order to offer treatments that recover children from autism (Mindd, 2012) and with the proliferation of information via the internet many organizations such as Autism Speaks have global reach into Australia.These more modern organizations follow in the wake of predecessors such as Bruno Bettelheim (1967) who in the 1960’s claimed to have found the cause of autism; cold and detached mothers who caused a defensive reaction in their children. Bettelheim claimed that the cure for these children was a ‘parentectomy’ – extended periods of time without their parents, he also claimed an 85 percent cure rate at his school (Herbert, Sharp, Gaudiano, 2002). Bettelheim was later found to be a ‘self styled’ child specialist with no formal training in psychoanalysis, his theories were subsequently discredited (Grinker, 2007).According to Shakespeare (2006) from a critical realist perspective we cannot discount the role of biomedical and psychological intervention for people with disabilities. Shakespeare highlights autism as a ‘difficult case’ as within the spectrum of autism there is a hierarchy of impairment from quite functional, yet different, people to people with significant intellectual and speech and language impairments. Shakespeare feels that the goal of promoting acceptance should not distract from mitigating the effects of impairment. However he comments that denigrating or misrepresenting the lives of people with disabilities, in the search for cures, cannot be justified.The TensionsScientific research agendas, fuelled by the hopes of parents for a cure, have propelled autism into the media spotlight. Celebrities have flocked to campaigns to find a cure for autism with Oprah Winfrey hosting television programs, ex model and actress Jenny McCarthy, parent of a child with autism, and her then partner Jim Carey walking for a cure.These celebrities begin to blur the lines between science and subjectivity, particularly McCarthy who claims her son has been cured of autism, and has written two books on healing autism and has founded an organisation named ‘Generation Rescue’. McCarthy relies on anecdotal evidence to support her work claiming her son is her science (Belkin, 2010). McCarthy (cited in Roque, 2010) fuels the negative emotions associated with autism to mobilize support for a cure:“Autism, as I see it, steals the soul from a child; then, if allowed, it relentlessly sucks life’s marrow out of the family members, one by one” (n.p.)Actor Lou Diamond Phillips also led a parade of children, ‘recovered’ from autism, during an opening event for an autism treatment organisation. Citing the work of Garland-Thomson, Roque (2010) argues that this is an example of the ‘freak discourse’ of the 19th century alive and well today. The parade, he argues, is an example of the reversal of the freak, a parade of reclaimed or recovered normalcy aimed at enticing the audience to purchase the treatment products.In Australia the organisation Autism Awareness (2008) ran a community service announcement that claims that autism is “stealing the minds and personalities of the generation of Australian children” and further claims “30,000 Aussie kids have been kidnapped by autism”. This community service announcement is recorded by a number of prominent Australian actors and TV personalities.A case that further demonstrates misrepresentation and the tension between those seeking a cure, and those seeking acceptance, is that of the “Ransom Notes”. Kras (2010) and Bagatell (2010) outline the case in which the New York University’s Child Studies Centre placed ‘medical advertisements’ highlighting the psychiatric disorders they treat. The advertisment for autism read as follows:AutismWe have your son.We will make sure he willnot be able to care forhimself or interact sociallyas long as he lives.This is only the beginning.ASAN organised a grass-roots internet protest including an online petition and letter writing initiative against this campaign. Due to overwhelming pressure and objection from the autism and disability communities, on the grounds that the campaign further stigmatized people with disabilities, the ads were pulled by the agency. In his critique of the Ransom notes campaign Kras (2010) says the following:“These ads depicted childhood psychiatric conditions as problems that need to be fixed and children with these conditions as abnormal outcasts from society. Their — or, rather, their parents’ — -only hope is to pay someone money to get them liberated from their disorder and returned to normal society. (n.p.)Here the medical model of disability is confronted with the social constructivist model of disability with the activists using the latter to claim that the attitudes promoted in the ads further disable the individual diagnosed with the condition.It is interesting to note that people may move along the continuum of attitudes toward cure and acceptance, dependent on their individual circumstances, environmental factors, and the social and political climate. Many parents like Estee Klar stand for the acceptance of their children, but started their journeys with autism, by looking for treatments and possible cures, and to this day use the treatments they have found effective. Even among people with autism themselves there are a variety of attitudes toward cure. Sue Rubin, a woman with autism, (cited in Ortega, 2009) says she belongs to the ‘cure group’, and thinks a cure for autism would be wonderful. Reflecting another point on the continuum, John Elder Robison (2009), a man also on the autism spectrum, believes that a cure should not be a focus but rather there should be a focus on treating the parts of autism that cause the most distress. And Ari Ne’eman from ASAN (2012) states ‘for many of us, the prospect of cure and normalization denies essential aspects of our identity.” (n.p.) This may seem as though he is rejecting any treatment or intervention, but that is far from the case, as he promotes the use of supports that enable the individual with autism to function more effectively in the world, without the need to remove their autism (ASAN, 2012).Baker (2011) asserts that for society to respond effectively to these issues, through policy innovation, it must embrace multiple understandings of disability including responses to the problem such as cure and acceptance, and despite the obvious tension between the responses, there is value in discontent, as without such interest from passionate proponents issues fall away from public and systemic agendas.ConclusionNeurodiversity is a newer concept within disability studies and provides a counterpoint to the medical model of disability. Neurodiversity uses both strategic essentialism and social constructivism to argue for the acceptance of people with autism. Many people with autism have their condition framed by the medical model, which asserts that, the desirable state of being is ‘normal’ functioning of the physical and psychological body, and that a return to this state, via treatment and ultimately cure, is desirable. There are many tensions between these two agendas that have been played out publically with families, organisations and celebrities promoting the elusive cure, and neurodiversty activists promoting acceptance, on the grounds that difference from the norm is a part of the human spectrum. Attitudes toward cure and acceptance are not fixed and cannot be ascribed as belonging to one group or another. What we can do is aim to understand how strong public discourse on these matters fuels policy agendas.ReferencesAmerican Psychiatric Association. (1994). Diagnostic and Statistical Manual ofMental Disorders. (4th ed.). Washington, DC: American Psychiatric Association.Autism Awareness. (2008). Autism awareness ad.http://www.youtube.com/watch?feature=player_embedded&v=_7IFs3cIRak Accessed 7/6/12Autistic Self Advocacy Network. (2012). Autism acceptance events and their history.http://autisticadvocacy.org/2012/03/autism-acceptance-events-and-their-history/ Accessed 7/6/12Autistic Self Advocacy Network. (2012). Position statements.http://autisticadvocacy.org/policy-advocacy/position-statements Accessed 7/6/12Bagatell, N. (2010). From Cure to Community : Transforming Notions of Autism Historical Trends Influencing the Emergence of an Autism Community. Ethos: Journal of the Society for Psychological Anthropology, 38(1), 33-55.Baker, D. L. The politics of neurodiversity: Why public policy matters. Boulder:ReinnerBelkin, L. (2010) The false profits of autism. New York Times Parenting Bloghttp://parenting.blogs.nytimes.com/2010/02/02/the-false-prophets-of-autism/ Accessed 6/6/2012Bettelheim, B. (1967). The empty fortress. New York: The Free PressBound, K. (2008). ‘Are you sure, sweetheart, that you want to be well?’: Anexploration of the neurodiversity movement. Radical Psychology: A Journal of Psychology, Politics & Radicalism, 7.Davidson, J. (2008). Autistic culture online: virtual communication and cultural expression on the spectrum. Social & Cultural Geography, 9(7), 791-806.Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University PressGrinker, R. R. (2007) Unstrange minds: Remapping the world of autism. New York: Basic Books.Herbert, J. D., Sharp, I. R., & Gaudiano, B. A. (2002). Separating fact from fiction in the aetiology and treatment of autism: A scientific review of the evidence. The Scientific Review of Mental Health Practice, 1(1).Klar, E. The joy of autism. http://www.esteeklar.com/ Accessed 7/6/2012Kras J. F. (2010) The “Ransom Notes” affair: When the neurodiversity movementcame of age. Disability Studies Quarterly, 30(1)McGann. P. J. & Hutson, D.J. (2011). Sociology of Diagnosis. Bingley: EmeraldGroup Publishing Ltd.Mindd Institute. (2012). Mindd Overview. http://mindd.org/s/archives.php/107- Disorders.html#autism Accessed 7/6/12Ortega, F. (2009). The Cerebral Subject and the Challenge of Neurodiversity. BioSocieties, 4(4), 425-445.Posavad, J. (2009). Acknowledging Mother’s Lived Experience of Raising a Child with Autism: A Phenomenological Inquiry. Unpublished Thesis. Faculty of Child and Youth Studies, Brock University: OntarioRobertson, S. M. (2010). Neurodiversity, quality of life, and autistic adults: shiftingresearch and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1)Robison, J. E. (2009). The “cure” for autism, and the fight over it. Psychology Today.http://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it Accessed 7/6/12Rocque, B. (2010). Science fictions: Figuring autism as threat and mystery in medico-therapeutic literature. Disability Studies Quarterly, 30(1)Shakespeare T. (2006). Disability rights and wrongs. London: Routledge

Meditations on Behavior Policing by Michael Scott Monje Jr. on Shaping ClayTrigger warning for isolation-related PTSDGrowing up, I might not have had an autism diagnosis, but that does not mean that my parents were oblivious to the differences between my behavior and typical behavior. Sure, when I was very young, they made their mistakes. For instance, my mother thought that the fact that I would sit for hours, focused on my own thoughts, made me an "easy" child. In some ways it did, because that meant that she could leave me unattended and run downstairs to change the laundry without worrying that I'd wander off. To a nineteen year old with a toddler, I'm sure that that had to seem like a blessing at times.

Similarly, when I was two or three and I started to get obsessed with organizing and arranging things, that made my parents' lives easier. After all, a child that can be kept busy sorting a pile of sticks from longest to shortest, then from thickest to thinnest, then from darkest to lightest is not a child who is likely to notice if you can't afford to get him a new toy every time he wants one. He's not as demanding.

One thing that just came to my mind was that the autistic mind is like an ocean, in that we have high and low tides. This does not mean "functioning level". It means sometimes it takes a lot more effort for me to do something like remember to eat or bathe. Sometimes it's easier to do these things, and sometimes it's harder. Being autistic means it's never automatic for me to do these things. My energy levels, or tides, change over various lengths of time. It is affected by things like my mood, what activity I am currently doing and how much energy it takes, how my physical body is feeling, who I am interacting with and how, and what my surroundings are. These affect tidal levels in my mental ocean. Sometimes a storm arrives and makes it harder for the tides to stay where I expect them. This week I had one of those unexpected storms and it has been hard on my executive functioning. I am hoping this storm will clear up soon because I have other tasks that I can't neglect.

I live in Florida. Those of you familiar with practical politics here in the US should have some idea of what this means regarding the significance of my vote.

Guess what? I chose to make my voice heard in a far more significant way than a mere blog post.

It took, as it happens, about forty minutes, most of which was spent in a line. For those of you who go, I recommend bringing a book -- the paper kind -- because the legality of cell phones and the like in voting areas is... well, an issue. It's illegal to use them here; no idea about elsewhere.

And, if the person reading this happens to be a politician? Yes, people with disabilities vote.

And that means that we can vote for (or against) you.

In the end, as I said, that's far more important than a mere blog post. Today, for me, was not just Autistics Speaking Day.

I'm kind of amazed at the advice out there for parents with auties. I
mean amazed in the sense that a lot of it is obvious - at least to us.
Some sites talk about stimming behaviours and how to work with them.
They even have names for them. We just called them "Crazy time!"

I'm going to guess a lot of parents tried to stop their kids from doing
these things, but we've learned from experience that when they are
actively encouraged, they last less time or sometimes disappear
completely. And I've always just assumed he was doing them because
either he needed to or just plain liked it. Sure, it's best to figure
out the underlying cause - sometimes they can do it because of pain, but
sometimes he could just be bored. As long as he does things in a way
that is safe, I don't think it really matters.

Last year, I published a manifesto. The blog took off. I was optimistic about the Internet as a launch pad for change. It has been a fine, tumultuous year. I protested, spoke, wrote, met interesting people, harassed Autism Speaks, hosted a small, autistic settee, and strongly implied an endorsement of a controversial transit referendum in the voice of The Arc of Georgia’s official Facebook page. I toed the line of permissibility, opining on its value to the people we serve without explicitly saying how to vote. I got tired, disillusioned, about online happenings. I have been on Tumblr long enough to see arguments circle back on themselves, downright dangerous war metaphors, and one argument on what other segments of the disability community should call themselves. In the face of the last, I turned off my computer. A prolonged exposure would have been unnecessarily embittering.

These things changed. My relationship to other autistics shifts with the vagaries of the endless flame war. Some aspects of my life have not. My thoughts take the shape of beams and pillars, flying buttresses, heavy, structural forms. I prefer extended tuba to human company. I hear, see, feel, and smell more than others. My world is sharp. I stare blankly at sarcasm. Eye contact feels foreign. I avoid it unless it might be to my advantage. Encounters with most online autistics feel foreign, too. Meeting them in person is nicer. I love the Internet as a platform for our community, but meatspace stays humane. I still chafe at identity politics, unheimliche mores, people who think the end justifies the means. A sense of duty, compassion, for suffering persons like me, that I hope and believe will be a people, draws me in. I hate speaking as an autistic. I look forward to being a special education lawyer and dispense with identity-as-expertise, a translator’s role. I still approach unfamiliar allistic parents of autistic children like buildings with overactive fire alarms.

Their kids keep me trying to reach them. When a boy outside the worst of the storm was frightened of Hurricane Sandy, I answered non-questions on Twitter.

When did he become aware of hurricanes? Was it a bad one? What does that category mean to him? Expand it. Consider explaining storm classification, etc. Break it into subcategories, not all of which are life-threatening.

I did it less out of the proper sentiments than faith, inability to bear children’s pain, the shadow of a memory. When I was a child, before I knew what we were, an older autistic helped me. She died before I could thank her. I am alive, independent, and planning a career that will allow me to be open about my neurology. The audience and arena are not ideal, but the performance is necessary. The welfare of many autistics, especially children, depends on it. I will contribute as I can. I was born autistic but choose to be a tuba player. I know bass lines, adrenaline, low margins for error. I built my life around the understanding that the show must go on.

So, there was some idea floating around that people ought to pick a day and not talk in honor of the communications difficulties faced by “people with autism”. Which, of course, helps cement the stereotype that we generally can’t communicate, and supports the idea that other people ought to speak for us. Which, it turns out, isn’t super popular with a lot of autistics, so some clever folks came up with the idea of Autistics Speaking Day. Of course. A lot of autistic people don’t particularly enjoy talking to strangers, or talking about themselves. Or are a little shy.

But hey, I’m always up for an excuse to ramble a bit.

I was diagnosed pretty late; I was 35 or so. This is in no small part because, when I was a kid and the schools were trying to figure out why I lacked social skills, they didn’t have a word for this. Hans Asperger had published his paper, but it hadn’t been translated into English. So in the US, people working with kids thought “autism” meant “probably can’t talk at all, randomly hits self or others”. (It’s since been discovered that many “non-verbal” autistics are quite capable of using language, they just have a hard time making mouth noises.)

Growing up, I was definitely a weird kid. I got in a lot of trouble. I had trouble with things that no one could explain, had trouble making friends, and found lots of things obvious or trivial that would have been expected to be hard for me. (Some of this may be the fairly severe ADHD, admittedly.)

I got pretty lucky, though. My parents may not have been autistic (although I suspect my dad was), but they were mathematics teachers. The thing is, if you’re going to teach math, there are two things you have to be good at. One is just answering the damn question instead of second-guessing people. The other is second-guessing people when the question shows that they are confused.

That may sound contradictory. It’s not. The problem most people have is that they can’t do the first; they not only can’t answer the literal question asked, they can’t even tell you what it was. They didn’t hear that question, they heard a question similar to it which made sense to them. There’s a number of jokes on the topic of how mathematicians think, but the punch line “there is at least one sheep in that field, at least one side of which is black” pretty much encapsulates the category.

The other problem you get is that people can’t do the second; they haven’t got the habit of trying to infer and check premises from what someone’s saying. Math teachers (well, good ones) tend to have that habit.

When I first learned about doors, I had a problem with them. If I knew a door was a pushing-type door, I would push it. If it didn’t open, I’d then try to turn the knob. Thing is, the weight on the door could wedge the latch so I couldn’t turn it. So my mom observed this, and taught me a ritual: Pull the door, turn the knob, push the door. Problem solved.

So I grew up being allowed to be me. My dad generally gave me a hard time about being a picky eater, but not all that much compared to what a lot of kids I know had to deal with. But if I wanted to sit around reading, no one was yelling at me to go play outside. If I wanted to ask my dad for explanations of what he was doing, he’d make a game effort to explain them. Note: He was the chair of the committee that did the subject-specific math GRE tests. He would make a reasonable effort to explain the questions, and their answers, to me. I was in my teens. Maybe it should have seemed strange to him, but he was more interested in getting a chance to talk about math then he was in deciding whether his kid was sufficiently normal.

One of the things I find really frustrating about the various anti-autistic propaganda sources, like Autism Speaks and the like, is that their basic premise is that autistic children are bad because they do not cope well with “normal” things. I’ve commented on this kind of thing before, at length. The thing is… I don’t think that’s a reasonable framing. Complaining that kids are dysfunctional in an environment hostile to them strikes me as unfair. Imagine the unfairness of complaining that kids behave in crazy and maladaptive ways when left in a room with hundreds of books on only one fairly advanced topic several years above their nominal reading level. Who would do that? That’d be insane. But the fact is, I could happily sit in my dad’s office at the college and read math textbooks. I might not get everything in them, but I enjoyed looking at them, and trying to puzzle things out. So are kids who weren’t like that defective? Do they need to be “fixed”?

In short, I reject the habitual conflation of “normal” in the statistical sense and “normative”. I don’t think we need to find a cure for kids who are unmanageable when treated poorly nearly as much as we need to work on education for parents so they don’t create that problem in the first place.

The cure thing has all sorts of possible issues; the main thing is, if there were a “cure” for autism on offer, a whole lot of parents would probably use it on kids who were in no way capable of consenting. (In fact, I’d be sort of shocked if any “cure” which came along were even capable of working on people developed enough to give consent.) Thing is… I’m not sure I like the idea of the category of people sort of like me being eradicated. Bleh.

School was, well. It was school. I did erratically well or badly, depending on what I felt like paying attention to. I was never much good at making friends, but gradually developed habits that allowed me to avoid making enemies. I went to college early and had a lot of fun, although I continued to have characteristic ADHDproblems.

Overall, I stand by my basic analysis: Autism and non-autism are both perfectly viable human states, but I think that a culture which contains members of both sets will be much, much, richer for the interactions.

I found out that I was autistic when I was sixteen, but it was not something that I was ever told. I had to discover this in secret, overhearing my parents talking quietly with my therapist—I was not invited to participate, then or later. I wasn’t permitted to think that I was anything but neurotypical, or make decisions on myself.

Being autistic causes me a lot of difficulties, but most of them aren’t related to being autistic itself; instead, they’re because other people just don’t get it. When I’m verbal (which is now a sometimes thing rather than a normally thing) I normally speak rather fluently and have a large vocabulary, so people assume that I can talk well all the time. They also assume that I’m able to understand things the way they can, and can respond the way they would. When this doesn’t happen (because I’m autistic and have M.E. and my verbal communication is variable) they assume this is because I don’t want to, rather than because I can’t.

I make a point of telling people (or having Johan tell people) who need to know (carers, social workers, doctors, nurses, them sort of people) that I have communication difficulties and that sometimes I may not be able to understand or respond in a typical way. I tell them that this is because I’m autistic and that M.E. complicates it. Some people understand, and know that it means if I’m not responding normally, or need to type, or need to be left alone as I can’t cope that it’s okay, and give me extra time or ask Johan or reword questions. Those people (often carers, and a couple of nurses) are awesome and we likes them very much Some others don’t understand initially, but then ask questions and then figure it out. Those people are also awesome, as they’re willing to take the time to learn. Some of those people have told me it’s helped them in other situations, so it’s good for all of us. We likes them very much

Then there’s the people who for whatever reason, decide they know better. When I have difficulties with communicating (or dealing with sensory stuff, or understanding things) instead of remembering that we’ve told them this can happen, or asking us questions to sort things out, they assume I’m doing it on purpose, or it’s because of psychological reasons and that yelling at me or belittling me will help. Those people we don’t like very much. Some of them have apologised when either Johan or I have been able to explain what happened, but others (often but not always doctors) are certain we’re mistaken and they have it right. They make many problems.

So, what can people do? If you’re told that someone is autistic, or they have communication difficulties (even if only occasionally), believe them. If you don’t understand how you can help them, ask. Autistic people and their carers will often have developed strategies to deal with their difficulties, and will often be able to tell you how best to communicate. If they ask to tell you at another time, or to get back to you, accept that and don’t push it, because a lot of autistic people have anxiety or other issues that mean they might struggle with answering questions spontaneously, and being pushed can make their anxiety or their communication issues worse.

Also, don’t make assumptions on ability based on how they are at any one time. Both Johan and I find that our ability to do things varies from day to day and from hour to hour, and that something we might accomplish with ease at one time may be very difficult or impossible at another time. This is quite normal for autistic people, and doesn’t mean they’ve “regressed” or that they’re not trying hard enough or are lazy or anything like that. That can go for pretty much any activity, including speaking and communicating.

For me personally, I try to communicate verbally when I am able to. If I can’t or it’s a struggle, then I switch to typing (either on my tablet, or on my iPhone). Sometimes it can take me a long time to respond to a question, or I may forget what I’m saying/typing in the middle of it and get very lost. Sometimes I need the person speaking to repeat what they’ve said as I’ve lost track or forgotten. If my M.E, is playing up badly and I can’t cope with light at all (even with sunglasses) then I might not be able to communicate other than by making gestures or possibly spelling words out on Johan’s hand with my finger. There are times when I can’t understand anything that anyone is saying, and I get very confused and scared. If you’re trying to communicate with me, then please accept it might not go well at all times, but I really appreciate it when you try to make it easier for me.

To those of you who make an effort to understand those of us who have difficulties with communicating (or any other task for that matter), thank you.

(I’m having some severe cognitive issues at the moment, caused by the combination of autism and severe M.E, so if there are any mistakes in this blog post please let me know and I’ll correct them. Thank you )

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